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Meeting - *kai of 2019 first spina bifida mom

Last update date October 16, 2019

We talked with child who needed medical care about under the theme of "shuen, attendance at school of spina bifida child" to society where family could live in in peace

  1. Group present
    Spina bifidaIt is meeting ... of mom (the backbone)*It is meeting ... (receive)
  2. Date
    From Tuesday, May 14, 2019 15:30 to 16:30
  3. Group summary
    We perform information exchange and alternating current in group of mothers of child of spondylosis (※ 1) for two minutes.

Summary of activity

  • We raised five parents of child visiting a hospital for treatment in the same hospital in 2016 through SNS and started. We are active in 19 people in all now.
  • About 90% of spina bifida child needs "withdrawing of urine" to let you excrete artificially (※ 2). Because care is necessary to elementary school Junior High School age where there comes to be self-withdrawing of urine, it hits shuen, attendance at school, and there are various problems and performs information exchange and interchange.
  • Our meeting is place of trouble consultation and information sharing between mothers and is place of exchange between spina bifida children. We want to value this place in future.

※1 "two minutes spondylosis:" Spinal cord appears outside the backbone; and the adhesion and inborn character disease to have lower limbs disorder, excretion disorder because is damaged.
※2 "withdrawing of urine" : Medical act to put catheter (pipe) in the bladder from the urethra, and to promote urination.

The current situation of shuen, attendance at school

  • If nurse is placed at garden in the case of nursery school, and the system depending on state of child is set, nurse performs withdrawing of urine. It becomes turning point whether or not we can continue work whether nurse can enter located nursery school.
  • Acceptance negotiated after being shuen because there was little garden information about child with a disability childcare, and having confirmed having nurse placement or not by oneself in all authorization nursery schools.
  • In kindergarten which child goes along, we have visit of nurse only on 1st in five days a week, and parent goes for withdrawing of urine on remaining 4th. In addition, you must let garden be closed when companion and parent to extracurricular activities are in poor physical condition, and it is the current situation that goes while there are various troubles.
  • As withdrawing of urine and change of clothes keeping stability in movement to toilet seat and state that sat down are difficult, for child of wheelchair, environment creation and support system which there is self withdrawing of urine are necessary.
  • Handling of convenience is not medical care, and, as for the child of stoma (※ 3), it is care unlike withdrawing of urine every day, but it is uneasy at point how should deal by service processing of bag of stoma and thinks on entering school.
  • We went to elementary school for withdrawing of urine twice a day, but temporary nursing at home to elementary school started the other day so far. We greatly appreciate response of the related organizations.
    If there is system which can share past correspondence example and information, understanding to medical care child deepens and will think that correspondence smoothens in future.
  • Support a little medical care because support withdrawing of urine of long vacations such as place to stay or summer vacation after school in the case of double-income family; authority of place to day service (elderly day care) becomes essential after school. We will think that it is enriched still more in future.
  • We passed withdrawing of urine every day, but we may get withdrawing of urine for temporary nursing at home from the other day and appreciate very much before.
    When we passed withdrawing of urine, we could not do it enough, and own working couldn't but give up care of parent and felt hot mentally physically. At the present when social advance of woman is declared, we pray for quitting a job, social thing that there is not that we lay-off temporarily for own child of incurable disease as well as spina bifida child out of necessity.

※3 "stoma:" It is flight and exit of urinary excretion made in stomach newly by operation.

For the making of place that learns with classmate, and grows up

  • When we let you go to general class, individual treatment support class of elementary school, medical care becomes the neck. There is thought of parent to want to let you continue in elementary school until now as we lived in the same way as other children. In addition, it is place to be worried about whether it leads to independence of child that parent visits multiple school every day.
  • In elementary school of Yokohama-shi, nurse dispatch for medical care was started, but will expect establishment of medical care in school by nurse full-time employment, temporary nursing at home in future to promote independence of medical care child.
    In addition, we are thankful if you can do "slight help" that there are not the people such as instruction to restroom, wearing of harness, help of change of clothes, flight soup stock of stoma by teachers such as member of support and member of assistance in general class, individual treatment support class, assistance teacher.
  • We talked about shuen, attendance at school today, but break time can enter destroyed stress, pool by explanation to bad-smelling classmate when, in addition, it leaked, anxiety, withdrawing of urine for bullying, and being troubled does not run out.
    Still it learns various troubles with classmate in spite of being hands we focus on this theme this time in that, and to have had time and becomes independent and is from thought of parent to want to make place growing up.
    Thank you for taking time valuable today.

Comment of the mayor

  • Touched state and thought that important child was brought up while assisting with family, friend while there was various difficulty every day, and mind was moved.
    As for both with obstacle and the person whom there is not, anyone can live a life in peace; think that social.
    In Yokohama-shi, the field of medical care, welfare, education cooperates from 2018 and accepts various consultation in at-home life of person needing medical care routinely and pushes forward the training, placement of "coordinators such as Yokohama type medical care child, person" connecting with support such as necessary medical care or welfare service.
    As the situation of child needing medical care is different in each one, there is place that is not careful enough in the current situation, but, with having watched story today, wants to further step in future.
    Child is treasure of country of Yokohama. We work to be able to live a life that all children are happy and are healthy regardless of having handy or not.
    Thank you today.

State of talk

For this tea meeting, I receive offer of the following products from authorized companies of "Yokohama goods Yokohama 001" such as three.

 ・Iwai Sesame Oil "Yokohama bubuarare"
 ・Maruka "Yokohama picture coaster"
 ・Sand glass "Yokohama three tower story tea tea back gift"
 For more information about "Yokohama goods Yokohama 001,"   
  Please see (the outside site).
  In addition, candy dish has you offer "reuse tableware" from NPO corporation Wave Yokohama.
 For more information about "reuse tableware,"
 Please see (the outside site).

Inquiry to this page

Civic Affairs Bureau public information consultation Service Department public hearing consultation section

Telephone: 045-671-2333

Telephone: 045-671-2333

Fax: 045-212-0911

E-Mail address [email protected]

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